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A quasi-experimental study aimed to investigate the effects of both teach-back and blended training methods on the contribution to self-care and perceived care burden among family caregivers of patients with heart failure. Seventy family caregivers of patients with heart failure were randomly allocated to two groups: one receiving the teach-back method and the other receiving the blended training method. Data were collected before, 1 month, and 3 months after the intervention. Data collection included demographic data and two tools: the Caregiver Contribution to Self-Care of Heart Failure Index and the Caregiver Burden Questionnaire for Heart Failure. Both teach-back and blended training methods were effective in educating family caregivers of patients with heart failure requiring home care. However, the teach-back method demonstrated better outcomes for the two concepts examined in this study.
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Cuidadores , Insuficiência Cardíaca , Autocuidado , Humanos , Insuficiência Cardíaca/enfermagem , Insuficiência Cardíaca/terapia , Cuidadores/educação , Cuidadores/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Inquéritos e Questionários , Comunicação para Apreensão de Informação , Sobrecarga do Cuidador/psicologia , Adulto , Serviços de Assistência Domiciliar , Efeitos Psicossociais da DoençaRESUMO
PURPOSE OF REVIEW: Shared decision making is crucial in palliative care for people with serious chronic respiratory diseases and their informal caregivers. Patient education is a critical component in this process, as it provides patients and their informal caregivers the necessary knowledge for informed decisions regarding symptom management, coping with breathlessness, and advance care planning. However, education does not automatically lead to acquiring knowledge. This review describes challenges for education for people with serious chronic respiratory diseases and their informal caregivers and describes how learner-centered education can address these. RECENT FINDINGS: People with serious chronic respiratory diseases and their informal caregivers face diverse information needs and learning challenges, with low health literacy and cognitive problems being common. Healthcare professionals can facilitate learner-centered education by enhancing motivation for knowledge acquisition by meeting information needs and learning preferences of patients and their informal caregivers, and by ensuring that information is understandable and readable for those with low health literacy and cognitive problems. E-health applications may serve as valuable tools in this process. SUMMARY: Learner-centered education may enhance knowledge acquisition in people with serious chronic respiratory diseases and their informal caregivers aiming to gain control over symptoms and optimize shared decision making and advance care planning.
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Cuidadores , Letramento em Saúde , Cuidados Paliativos , Educação de Pacientes como Assunto , Humanos , Cuidadores/psicologia , Cuidadores/educação , Doença Crônica , Educação de Pacientes como Assunto/organização & administração , Educação de Pacientes como Assunto/métodos , Cuidados Paliativos/organização & administração , Planejamento Antecipado de Cuidados/organização & administração , Tomada de Decisão Compartilhada , Aprendizagem , Doenças Respiratórias , Conhecimentos, Atitudes e Prática em Saúde , Adaptação Psicológica , Tomada de DecisõesRESUMO
Accidents in childhood have a high morbidity and mortality rate and are often preventable, which reinforces the importance of educational measures to prevent unintentional injuries. This study aimed to identify and describe useful educational strategies for preventing childhood accidents in communities. This systematic review was guided by PRISMA (2020) and registered on the PROSPERO platform (ID: CRD42024500956). A search strategy was developed by combining the descriptors "Accident Prevention", "Child", and "Health Education" with the Boolean operator AND, applied to the PubMed/MEDLINE, Web of Science, LILACS, and SciELO databases. A total of 5,037 studies were located, including observational articles published from 2018 to 2023, with children aged 0-12 years and/or their parents/caregivers. The quality of the studies was assessed based on the Qualitative Studies Checklist and the Research Triangle Institute Item Bank instruments. The bibliographic sample consisted of 30 articles, mostly classified as high quality, with a population of 4,510 adults and 54,190 children from various countries. Educational strategies for accident prevention were described, aimed at parents and guardians, children, and both. This review, addressing innovative educational strategies for preventing childhood accidents, highlights playful approaches for children and visual methods for caregivers. Implementation faces challenges related to evaluation and socioeconomic factors, making rigorous criteria and prolonged follow-ups important for continuous effectiveness.
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Prevenção de Acidentes , Educação em Saúde , Humanos , Criança , Prevenção de Acidentes/métodos , Pré-Escolar , Lactente , Educação em Saúde/métodos , Pais/educação , Lesões Acidentais/prevenção & controle , Recém-Nascido , Cuidadores/educaçãoRESUMO
OBJECTIVE: To evaluate the impact of a counselling programme to strengthen the health and nutrition behaviours of caregivers of children under 2 and the sustainability of that impact through reduced intervention intensity one year later. DESIGN: The programme trained community- and facility-based health staff to provide nutrition counselling. We conducted an impact evaluation with a modified stepped-wedge design using difference-in-differences analysis to compare indicator changes in an intervention group to a comparison group (midterm survey) and then a full intervention group to a light intervention group (final survey). SETTING: Batken and Jalal-Abad oblasts, the Kyrgyz Republic, 2020-2023. PARTICIPANTS: Caregivers of children under 2 provided 6253 responses in three telephone surveys. RESULTS: We observed statistically significant differences between the intervention and comparison groups at midterm for the percentage of children consuming vitamin A-rich foods; an increase in the intervention group (58-62 %) and a decrease in the comparison group (61-57 %). We observed similar results with exclusive breastfeeding (51-55 % in the intervention group and 48-40 % in the comparison group). There were also positive differences in other health and nutrition indicators. With the final survey results, in general, we observed statistically significant differences indicating a bigger change in full intervention areas compared to light intervention areas. We observed small negative changes in many indicators in light intervention areas. CONCLUSIONS: This evaluation highlights the importance of continued support for local interventions, particularly counselling programmes, to foster optimal nutrition behaviours.
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Cuidadores , Aconselhamento , Humanos , Cuidadores/estatística & dados numéricos , Cuidadores/educação , Aconselhamento/métodos , Feminino , Quirguistão , Lactente , Masculino , Adulto , Estado Nutricional , Avaliação de Programas e Projetos de Saúde , Aleitamento Materno/estatística & dados numéricos , Comportamento Alimentar , Promoção da Saúde/métodos , Pré-Escolar , Adulto Jovem , Pessoa de Meia-IdadeRESUMO
INTRODUCTION: Limited access to psychological treatment is a pressing problem in the US, especially in more rural areas. One potentially underutilized resource is informal care from friends and family members. Although those in rural areas rely on informal care more than those in urban areas, there is little to guide interested caregivers in how they can be most effective. METHODS: In this study, we conducted a pilot test of the Friends and Family for Mental Health Program, a mental health skills program we developed to enhance informal care and reduce psychological symptoms among informal caregivers. To provide an initial test of the potential benefits of this program, we evaluated the impact of the program on informal care skills, hope, psychological symptoms, and mental health skills. RESULTS: Informal care skills and hope improved. Participants also reported reduced anxiety. We considered intervention feedback to inform intervention development. DISCUSSION: Overall, findings provided preliminary support for the program and provide directions for future refinements. CONCLUSION: Though further research is needed, initial evidence suggests mental health skills programs directed at informal caregivers are both desired and beneficial in rural areas.
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Cuidadores , Terapia Cognitivo-Comportamental , População Rural , Humanos , Projetos Piloto , Feminino , Masculino , Cuidadores/psicologia , Cuidadores/educação , Pessoa de Meia-Idade , Adulto , Saúde Mental , Idoso , Amigos/psicologia , Família/psicologiaRESUMO
Background: As dementia progresses, patients exhibit various psychological and behavioral symptoms, imposing a significant burden on families and society, including behavioral and psychological symptoms of dementia. However, caregivers lack professional care knowledge and skills, making it difficult for them to effectively cope with the diverse challenges of caregiving. Therefore, it is necessary to provide caregivers with professional knowledge and skills guidance. Objective: This study aimed to analyze the impact of internet-based training on behavioral and psychological symptoms of dementia in patients, and explore how this training model affects the caregiving abilities and caregiving burden of the family caregivers of patients with dementia. Methods: Using a consecutive enrollment method, the Department of Geriatrics at Zhejiang Hospital (Zhejiang, China) recruited 72 informal caregivers of patients with dementia. These caregivers were randomly divided into an intervention group and a control group, with 36 participants in each group. The intervention group underwent caregiver skill training via a web-based platform, whereas the control group initially received face-to-face follow-up guidance and was subsequently offered web-based training after 6 months. To assess the effectiveness of the intervention program, we used the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Chinese version of the Zarit Burden Interview (CZBI), and the Sense of Competence in Dementia Care Staff Scale (SCIDS) for evaluations conducted before the intervention, 3 months after the intervention, and 6 months after the intervention. Results: Between July 2019 and December 2020, a total of 66 patients successfully completed the intervention and follow-up. After 6 months of intervention, the NPI-Q score of the intervention group was 3.18 (SD 3.81), the CZBI score was 10.97 (SD 5.43), and the SCIDS score was 71.88 (SD 4.78). The NPI-Q score of the control group was 8.09 (SD 8.52), the CZBI score was 30.30 (SD 13.05), and the SCIDS score was 50.12 (SD 9.10). There were statistically significant differences in NPI-Q (P=.004), CZBI (P<.001), and SCIDS scores (P<.001) between the intervention group and the control group. Repeated measures analysis of variance showed that compared with before the intervention, there were statistically significant differences in CZBI (P<.001) and SCIDS (P<.001) scores 3 months after the intervention, while the difference in NPI-Q (P=.11) scores was not significant. The total scores of NPI-Q (P<.001), CZBI (P<.001), and SCIDS (P<.001) were significantly improved 6 months after the intervention. In addition, the results of the covariance analysis showed that after excluding the time effect, the web-based training intervention significantly reduced the NPI-Q score (-2.79, 95% CI -4.38 to -1.19; P<.001) of patients with dementia and the CZBI score (-13.52, 95% CI -15.87 to -11.16; P<.001) of caregivers, while increasing the SCIDS score (12.24, 95% CI 9.02-15.47; P<.001). Conclusions: Internet-based training could significantly reduce the level of behavioral symptoms in older patients with dementia and alleviate the burden on caregivers, enhancing their caregiving abilities. Our results confirmed the effectiveness and feasibility of web-based training, which was of great significance in providing caregiving knowledge training for informal caregivers of persons with dementia.
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Cuidadores , Demência , Humanos , Cuidadores/psicologia , Cuidadores/educação , Demência/enfermagem , Demência/terapia , Demência/psicologia , Masculino , Feminino , Idoso , Pessoa de Meia-Idade , China , Inquéritos e Questionários , Internet , Intervenção Baseada em Internet , Adaptação Psicológica , Idoso de 80 Anos ou maisRESUMO
BACKGROUND: Stress related to Alzheimer disease and related dementias (ADRD) is common, particularly among those who care for persons with challenging behaviors and personality or mood changes. Mindfulness and self-compassion programs are efficacious for managing stress. The skills of mindfulness and self-compassion, however, must be integrated with behavioral management skills in order to effectively improve caregiver stress. OBJECTIVE: In this study, we aimed to describe the development of the Mindful and Self-Compassionate Care (MASC) program, the first program that combines mindfulness and self-compassion with behavioral management skills to decrease caregiver stress, and its evaluation in the Supporting Our Caregivers in ADRD Learning (SOCIAL) study. METHODS: Using the National Institutes of Health (NIH) stage model, we describe 3 phases of work encompassing NIH Stages 1A and 1B. In phase 1, we conducted 5 focus groups (N=28) of stressed individuals caring for persons with ADRD and challenging behaviors. Rapid data analysis informed the development of a 6-week online intervention. Phase 2 (NIH stage 1A) includes an open pilot (N>10) with optional exit interviews. Phase 3 (NIH stage 1B) is a feasibility randomized controlled trial of the intervention versus the Health Education Program control. Primary outcomes focus on feasibility with secondary outcomes encompassing acceptability, credibility, fidelity, and signals of preliminary efficacy. Phase 1 follows traditional recommendations for qualitative analyses (at the point of thematic saturation) which was achieved after 5 focus groups (N=28). For the phase 2 open pilot, up to 12 participants will be recruited. For the phase 3 feasibility study, recruitment of 80 caregivers will allow the assessment of feasibility benchmarks. Data for phase 1 included 5 focus groups. In phases 2 and 3, data collection will occur through REDCap (Research Electronic Data Capture; Vanderbilt University) surveys and an optional qualitative exit interview. Analyses will include hybrid inductive-deductive analyses for qualitative data and assessment of changes in our intervention targets and outcomes using t tests and correlation analyses. RESULTS: In phase 1, caregivers reported interest in a brief, online stress management program. Participants held misconceptions about mindfulness and self-compassion, but after detailed explanation thoughts, these skills could be helpful when directly linked to implementation during caregiving routines. Phases 2 and 3 will be completed by the end of 2025. CONCLUSIONS: We describe the protocol for the Supporting Our Caregivers in ADRD Learning study, as well as the development and feasibility testing of the Mindful and Self-Compassionate Care intervention. Future work will include a fully powered efficacy-effectiveness randomized controlled trial. TRIAL REGISTRATION: ClinicalTrials NCT05847153; https://clinicaltrials.gov/study/NCT05847153; and ClinicalTrials.gov NCT06276023; https://clinicaltrials.gov/study/NCT06276023. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/58356.
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Cuidadores , Demência , Empatia , Atenção Plena , Estresse Psicológico , Humanos , Cuidadores/psicologia , Cuidadores/educação , Atenção Plena/métodos , Estresse Psicológico/terapia , Estresse Psicológico/psicologia , Demência/enfermagem , Demência/psicologia , Demência/terapia , Grupos Focais , Masculino , FemininoRESUMO
BACKGROUND: This study presents findings from a randomized controlled trial of Sleep and Adjustment in Foster Environments for Toddlers and Preschoolers (SAFE-T), a telehealth-delivered, trauma-informed sleep intervention for children in or adopted from foster care. METHODS: N = 45 caregivers of children aged 2 to 5 years (M = 4.01; SD = 1.04) were randomized to SAFE-T or Sleep Education Support (SES), an active control condition. Assessments, including one-week parent-report sleep diaries, were completed at pre- intervention, post- intervention, and 3 months follow-up. RESULTS: Results indicated improvements in multiple sleep outcomes at post-intervention and three months later, including nighttime sleep duration, nighttime awakenings, and overall sleep problems in the SAFE-T group only. Sleep-based improvements were largely maintained or strengthened over time. Several secondary outcomes, including child emotional and behavior problems and parenting stress, also improved considerably in the SAFE-T but not the SES group. CONCLUSIONS: Findings suggest SAFE-T to be a promising intervention for improving sleep health among children currently or previously placed in foster care.
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Cuidados no Lar de Adoção , Humanos , Pré-Escolar , Feminino , Masculino , Cuidados no Lar de Adoção/psicologia , Transtornos do Sono-Vigília/terapia , Telemedicina , Sono , Adaptação Psicológica , Cuidadores/psicologia , Cuidadores/educação , Criança Acolhida/psicologiaRESUMO
BACKGROUND: Sleep disturbances are common and distressing for people with dementia and their families. Non-pharmacological interventions should be first-line management, avoiding harmful pharmacological side-effects, but there is none with known effectiveness. We aimed to establish whether DREAMS START, a multicomponent intervention, reduced sleep disturbance in people with dementia living at home compared with usual care. METHODS: We conducted a phase 3, two-arm, multicentre, parallel-arm, superiority randomised controlled trial with masked outcome assessment, recruiting dyads of people with dementia and sleep disturbance and family carers from community settings. Randomisation to the DREAMS START intervention (plus usual treatment) or usual treatment was conducted at dyadic level, blocked, and stratified by site, with a web-based system assigning allocation. DREAMS START is a six-session, manualised intervention delivered face to face or remotely by non-clinically trained graduates over an approximately 3-month period. The primary outcome was sleep disturbance measured by the Sleep Disorders Inventory (SDI) at 8 months. Analyses were on the intention-to-treat population. This trial is registered with ISRCTN 13072268. FINDINGS: Between Feb 24, 2021, and March 5, 2023, 377 dyads were randomly assigned (1:1), 189 to usual treatment and 188 to intervention. The mean age of participants with dementia was 79·4 years (SD 9·0), and 206 (55%) were women. The mean SDI score at 8 months was lower in the intervention group compared with the usual treatment group (15·16 [SD 12·77], n=159, vs 20·34 [16·67], n=163]; adjusted difference in means -4·70 [95% CI -7·65 to -1·74], p=0·002). 17 (9%) people with dementia in the intervention group and 17 (9%) in the control group died during the trial; the deaths were unrelated to the intervention. INTERPRETATION: To our knowledge, DREAMS START is the first multicomponent intervention to improve the sleep of people living at home with dementia more than usual clinical care. It had sustained effectiveness beyond intervention delivery. The intervention's delivery by non-clinically trained graduates increases the potential for implementation within health services, adding to usual clinical care. FUNDING: National Institute for Health and Care Research Health Technology Assessment.
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Cuidadores , Demência , Humanos , Feminino , Demência/terapia , Masculino , Cuidadores/psicologia , Cuidadores/educação , Idoso , Idoso de 80 Anos ou mais , Transtornos do Sono-Vigília/terapia , Transtornos do Sono-Vigília/psicologia , Método Simples-Cego , Resultado do TratamentoRESUMO
OBJECTIVE: To assess changes in caregiver practices for young children after integrating the Responsive Care and Early Learning (RCEL) Addendum package into nutrition services after 10 months of implementation. DESIGN: We measured changes in RCEL practices through a pre- and post-intervention assessment comprising a household survey and observations. To implement the intervention, we trained health service staff and community volunteers to deliver RCEL counselling to caregivers of children 0-23 months of age through existing community and facility-level platforms. SETTING: Jalal-Abad and Batken regions in the Kyrgyz Republic. PARTICIPANTS: Caregivers of children aged 0-23 months at baseline. RESULTS: We found statistically significant increases in RCEL practices, availability of early learning opportunities in the home, decreases in parenting stress and improvements in complementary feeding practices after the intervention implementation period. CONCLUSIONS: Findings show that delivery of RCEL counselling using the RCEL Addendum was associated with improved responsive care practices and early learning opportunities. We also found that integration of RCEL with infant and young child feeding counselling did not disrupt nutrition service delivery or negatively affect complementary feeding outcomes, but rather suggest synergistic benefits. Given the importance of providing holistic care to support optimal early childhood development, these findings provide new evidence on how to strengthen the delivery of nurturing care services in the Kyrgyz Republic.
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Cuidadores , Aconselhamento , Fenômenos Fisiológicos da Nutrição do Lactente , Humanos , Lactente , Cuidadores/educação , Cuidadores/psicologia , Quirguistão , Aconselhamento/métodos , Feminino , Masculino , Recém-Nascido , Adulto , Poder Familiar , Promoção da Saúde/métodosRESUMO
Background: Many older people with comorbidities encounter emergency or life-threatening situations, but the response is often neglected or delayed, resulting in increased morbidity and mortality rates. Community preparedness to reduce the impact of emergency crises on older people is essential. This study aimed to determine the effect of an emergency scenario-based training program (ESBTP) for elderly care on the knowledge, self-confidence, and competency of volunteer caregivers in a rural Thai community. Methods: The one-group pre-post-test, quasi-experimental study, was conducted with a non-randomized research sampling of 40 community healthcare volunteers in Vibhavadi district, Surat Thani, Thailand. The research was conducted between October and December 2021. The ESBTP was based on Bloom's learning theory. The research instrument was a three-part questionnaire measuring knowledge, self-confidence, and competency in geriatric life-threatening surveillance and emergency assistance (GLTSEA) at one, four, and eight weeks of training. Data were analyzed using Bonferroni statistics and repeated measures ANOVA through the software IBM SPSS version 28 with hypothesis testing at P<0.05. Results: The results revealed that at Week 1, Week 4, and Week 8, the volunteers attending the ESBTP demonstrated significantly higher GLTSEA competency (P<0.001). Otherwise, the participants were not significantly different in GLTSEA knowledge (P=0.068) and self-confidence (P= 0.052) after the training. Conclusions: Volunteers' competency increased after ESBTP, but there must be continuity in community training to develop the relevant knowledge, self-confidence, and skills for emergencies.
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Cuidadores , População Rural , Voluntários , Humanos , Tailândia , Feminino , Masculino , Idoso , Cuidadores/educação , Cuidadores/psicologia , Voluntários/psicologia , Voluntários/educação , Pessoa de Meia-Idade , Adulto , Conhecimentos, Atitudes e Prática em Saúde , Inquéritos e Questionários , Autoimagem , Autoeficácia , População do Sudeste AsiáticoRESUMO
BACKGROUND: Most children with developmental disabilities (DD) live in low- and middle-income countries, but access to services is limited, impacting their ability to thrive. Pilot study findings of the World Health Organization's Caregiver Skills Training (WHO CST) intervention, which equips caregivers with strategies to facilitate learning and adaptive behaviours in children with DD, are promising but evidence from an appropriately powered trial delivered by non-specialist facilitators is lacking. This study will investigate the effectiveness and the resource impacts and costs and consequences of the WHO CST intervention in four sites in rural and urban Kenya and Ethiopia. METHODS: This is a 2-arm multi-site hybrid type-1 effectiveness implementation cluster randomised controlled superiority trial. After baseline assessments (T0) are completed by participants in clusters comprising 7 to 10 caregiver-child dyads, the clusters will be randomised to either the WHO CST intervention arm or a waitlist enhanced care as usual control arm. Further assessments will be completed at endpoint (T1, 18 ± 2 weeks after randomisation) and follow-up (T2, 44 ± 2 weeks after randomisation). The intervention comprises three individualised home visits and nine group sessions with trained non-specialist facilitators. Participants in the control arm will receive the intervention after completing follow-up assessments. We aim to recruit 544 child-caregiver dyads, evenly distributed across the two arms and countries. The co-primary outcomes are the child-focused Child Behavior Checklist (assessing emotional and behavioural problems) and the caregiver-focused Pediatric Quality of Life Inventory (assessing caregiver quality of life), both assessed at endpoint. Secondary outcome measures comprise the two co-primary outcomes at follow-up and ten additional outcome measures at endpoint, assessing stigma-based experiences, depressive symptoms, household food insecurity, child disciplinary strategies and beliefs, CST knowledge and skill competencies, caregiver and child quality of life, social support, and children's communication modes and functions. After quantitative follow-up assessments are completed, a mixed-methods evaluation approach will be used to investigate implementation processes and acceptability, feasibility, and potential sustainability of the intervention. DISCUSSION: The study's findings will provide evidence of the effectiveness and resource impacts and costs and consequences of a non-specialist-delivered intervention in under-resourced contexts in one low-income and one middle-income country in East Africa. Findings will inform future research, intervention, and policy efforts to support children with DD and their families in under-resourced majority world contexts. TRIAL REGISTRATION: Pan African Clinical Trial Registry PACTR202310908063134. Registered on October 16, 2023.
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Cuidadores , Deficiências do Desenvolvimento , Saúde Mental , Resiliência Psicológica , Humanos , Cuidadores/psicologia , Cuidadores/educação , Deficiências do Desenvolvimento/psicologia , Deficiências do Desenvolvimento/terapia , Etiópia , Criança , Quênia , Pré-Escolar , Estudos Multicêntricos como Assunto , Comportamento Infantil , Qualidade de Vida , Estudos de Equivalência como Asunto , Organização Mundial da Saúde , Desenvolvimento Infantil , Feminino , Adaptação Psicológica , Masculino , Fatores de TempoRESUMO
PURPOSE: This pilot study investigated delivering enhanced milieu teaching tailored for children with Down Syndrome (EMT-DS) through hybrid telepractice. METHOD: In this multiple-baseline design across behaviors study, a speech-language pathologist (SLP) taught EMT-DS to three caregivers and their children with DS (22-40 months) using a hybrid service delivery model. Sessions were conducted in person and via telepractice. The SLP taught caregivers EMT-DS, emphasizing the use of (a) four target EMT strategies: matched turns, expansions, time delays, and milieu teaching episodes; (b) augmentative and alternative communication (AAC; manual signs, speech-generating device); and (c) aided AAC modeling. The SLP provided caregiver instruction following the teach-model-coach-review approach. Caregiver outcomes were the accuracy (primary) and frequency (secondary) of EMT strategy use. Child outcomes were exploratory and included the rate of symbolic communication acts, weighted number of communication acts, and number of different words (NDW). RESULTS: There was a functional relation between the intervention and the accuracy and frequency of EMT strategy use for all three caregivers. All caregivers showed an increase in the accuracy for all four target strategies. Caregivers also increased the frequency of the three EMT strategies: expansions, time delays, and milieu teaching episodes. There were no changes in the frequency of matched turns. Caregiver use of EMT strategies maintained for 6 weeks post-intervention. After caregivers learned EMT strategies, gradual increases in the rate of symbolic communication acts and NDW occurred for all three children. CONCLUSION: Results demonstrate the preliminary efficacy of using a hybrid service delivery model to teach caregivers EMT-DS. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.27115252.
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Cuidadores , Síndrome de Down , Patologia da Fala e Linguagem , Humanos , Pré-Escolar , Projetos Piloto , Masculino , Feminino , Patologia da Fala e Linguagem/educação , Patologia da Fala e Linguagem/métodos , Cuidadores/educação , Lactente , Telemedicina , Auxiliares de Comunicação para Pessoas com Deficiência , Linguagem InfantilRESUMO
Introduction: Severe early childhood caries (S-ECC) is a common disease within marginalized pediatric populations. S-ECC is often treated under general anesthesia to facilitate extensive treatment in young children, but treatment does not address etiology of an infectious disease that is rooted in health behaviors. Without behavior changes related to toothbrushing and sugar consumption, many children experience recurrent disease and some require subsequent surgeries. To improve post-surgery oral health, we developed PROTECT (Preventing Recurrent Operations Targeting Early Childhood Caries Treatment), a community health worker (CHW)-delivered behavioral intervention for caregivers that focuses on children's oral health behaviors. The purpose of this study was to use qualitative research methods to receive feedback on the planned protocol for a pilot study of PROTECT, a six-month intervention initiated at the time of a child's surgery to treat severe early childhood caries. Methods: Study participants included caregivers of children presenting for surgery [n = 12], CHWs [n = 8] and dentists [n = 8] in a series of audio-video recorded semi-structured interviews. Five coders used Braun and Clarke's six-phase framework for data analysis. Results: Participant feedback on the pilot study protocol yielded the following themes: (1) right time, population, and type of support; (2) flexible intervention delivery and content; (3) inclusion of other social determinants of health; and (4) cultural considerations. Implementing a behavioral intervention for caregivers in the immediate time during a child's surgery for treating dental caries was widely deemed important and timely in order to affect post-surgical behavioral and clinical outcomes. Flexibility in content, timing, and communication were all named as facilitators to participant engagement and study retention. Caregivers and CHWs emphasized the relevance of addressing other social determinants of health. CHWs emphasized the importance of training in becoming aware of culture and practicing with understanding and humility, given the influence on health beliefs, behaviors, and family dynamics. Cultural considerations in intervention delivery were deemed an important factor for participant retention and engagement. Discussion: Participant feedback led to critical modifications of the pilot study protocol, specifically in intervention content and CHW-led delivery.
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Cuidadores , Agentes Comunitários de Saúde , Cárie Dentária , Pesquisa Qualitativa , Humanos , Cárie Dentária/prevenção & controle , Cárie Dentária/terapia , Cuidadores/psicologia , Cuidadores/educação , Projetos Piloto , Pré-Escolar , Feminino , Masculino , Odontólogos/psicologia , Adulto , Retroalimentação , Comportamentos Relacionados com a Saúde , Terapia Comportamental/métodosRESUMO
This study aimed to investigate the effect of simulation-based training on hand hygiene knowledge and practices among palliative caregivers. The study was conducted with 60 caregivers in a palliative care clinic between December 2022 and September 2023. The participants were divided into two groups by simple randomization. The intervention and control groups received the same hand hygiene theoretical education and demonstration. The intervention group also received additional simulation-based hand hygiene practices recommended by the World Health Organization. A pretest-posttest design was used to assess hand hygiene knowledge and practices. Data were collected with personal information, hand hygiene knowledge, and hand hygiene practice forms. Analysis of covariance was performed to compare posttest scores between the groups. Simulation-based hand hygiene training programs offer an effective and feasible strategy to improve the hand hygiene knowledge and practices of caregivers. It should be integrated into clinical areas to increase palliative caregivers' hand hygiene knowledge and practices. Evidence-based practices can be improved by increasing randomized controlled studies on the effectiveness of simulation-based hand hygiene training for caregivers. Trial Registration: The study was registered at ClinicalTrials.gov with registration number NCT05848596.
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Cuidadores , Higiene das Mãos , Conhecimentos, Atitudes e Prática em Saúde , Cuidados Paliativos , Treinamento por Simulação , Humanos , Feminino , Masculino , Cuidadores/educação , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Adulto , Treinamento por Simulação/métodos , Treinamento por Simulação/normas , Treinamento por Simulação/estatística & dados numéricos , Pessoa de Meia-Idade , Higiene das Mãos/normas , Higiene das Mãos/métodos , Higiene das Mãos/estatística & dados numéricos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Método Duplo-CegoRESUMO
Background: There is a lack of evidence regarding the effectiveness of empowerment healthy education for caregivers of Alzheimer's patients. Objective: To explore the effectiveness of the intervention of health education guided by empowerment theory on dementia knowledge, caregiving readiness, positive caregiving emotions, anxiety, and depression in informal Alzheimer's disease caregivers. Design: A single-blinded, randomized controlled trial. Setting: A teaching hospital in Tianjin, China. Participants: Eighty caregivers of Alzheimer's disease patients. Methods: Participants were recruited from the hospital and randomly assigned to either experimental or control group. The experimental group underwent a 12-weeks, one-to-one intervention of six session lasting 45-60 min each. The control group received conventional health education. Outcome measures included dementia knowledge, caregiver readiness (primary outcomes), positive caregiving emotions, anxiety, and depression (secondary outcomes). Results: After 12 weeks, the intervention group exhibited significantly higher levels of dementia knowledge, caregiver readiness, and positive caregiving emotions compared with the control group. Furthermore, levels of hospitalization-related anxiety and depression were lower in the intervention group. All study results of this study showed statistically significant differences (p < 0.05). Discussion: Empowerment theory-based health education appears to be an effective intervention for improving caregiver and readiness to care for caregivers of Alzheimer's disease individuals. The intervention may help reduce caregivers' anxiety and depression levels.
Assuntos
Doença de Alzheimer , Cuidadores , Empoderamento , Educação em Saúde , Humanos , Cuidadores/psicologia , Cuidadores/educação , Doença de Alzheimer/psicologia , Feminino , Masculino , Educação em Saúde/métodos , Pessoa de Meia-Idade , China , Idoso , Método Simples-Cego , Depressão/psicologia , Ansiedade , Conhecimentos, Atitudes e Prática em SaúdeRESUMO
OBJECTIVES: Care for community-dwelling people with dementia is frequently delegated to relatives, who find themselves in the role of informal caregivers with no practical management knowledge. This situation exposes caregivers to increased risk for emotional wellbeing. The current study aims to test whether the integration of the efficacy of an immersive virtual reality (VR) experience into an online psychoeducational program impacts caregiver empathy and therefore emotional wellbeing. METHODS: One-hundred informal caregivers of mild-to-moderate Alzheimer's disease (AD) patients will be enrolled and randomly assigned to (i) an online psychoeducational program (control arm); or (ii) an online psychoeducational program integrated with VR (experimental arm). VR will consist of 360-degree videos involving the caregivers to an immersive experience of dementia symptoms from the patient's perspective. Before, after the intervention and after 2 months, all participants will complete validated clinical scales for caregiver burden and anxiety (primary outcomes) and sense of competence and dispositional empathy (secondary outcomes). A subsample of 50 participants will also undergo MRI exam, including structural and functional (resting-state and task-functional MRI [fMRI]) sequences. The fMRI task paradigm will use emotional stimuli to evaluate the neural correlate of empathy, by stressing its cognitive and affective components. The main outcome will be the change in the clinical assessment; the secondary outcome will be the change in brain connectivity of networks subserving the empathic and emotional functioning. RESULTS: We expect that the psychoeducational program will decrease anxiety and stress, enabling caregivers to perceive themselves capable of managing AD patients at home, educating them on symptom handling and boosting their cognitive empathy. In the experimental intervention, the VR-based experience will act as an add-on to psychoeducation, leading to greater improvement in the assessed clinical dimensions. VR should, in fact, enable a deeper understanding of disease symptoms and improve caregivers' cognitive empathy. We expect that the experimental intervention will result in deeper comprehension of disease symptoms and further strengthen caregivers' cognitive empathy. At the neural level, we expect to observe increased activation in circuits subserving cognitive empathy and decreased activation in circuits underlying affective empathy. CONCLUSIONS: To the best of our knowledge, this will be the first randomized controlled trial assessing the effect of combining psychoeducational interventions with VR-based experience in caregivers, and assessing both clinical and imaging outcomes. TRIAL REGISTRATION: Registered in ClinicalTrials.gov (NCT05780476).
Assuntos
Doença de Alzheimer , Cuidadores , Realidade Virtual , Humanos , Cuidadores/psicologia , Cuidadores/educação , Doença de Alzheimer/psicologia , Masculino , Feminino , Idoso , Empatia/fisiologia , Imageamento por Ressonância Magnética , Pessoa de Meia-Idade , AnsiedadeRESUMO
BACKGROUND: 'Learning to feel better and help better' is a psychoeducational intervention that aims to empower family caregivers of people with dementia by helping them cope better with the daily stress of dementia caregiving. The intervention has been adapted to a Swiss context and evaluated with a mixed-method design, yielding promising results in caregivers, such as a reduced subjective burden and improved self-efficacy. Qualitative findings have provided insight into potentially relevant intermediate changes that must be further explored to better understand how the intervention precipitates the achieved changes. We aim to qualitatively explore such changes, related mechanisms and key intervention components in the context of this intervention. METHODS: A constructivist grounded theory approach was used to achieve this aim. Changes, related mechanisms and key intervention components were identified by exploring the following: 1) longitudinal qualitative data, collected from 13 family caregivers via interviews performed before, during and after the intervention (39 interviews total) and 2) cross-sectional post-intervention interview data collected from 22 family caregivers (22 interviews). RESULTS: Experiencing calmness was the most important change for caregivers in the context of this intervention. The calmness model, developed based on the qualitative analysis, illustrates the intermediate changes that contributed to calmness, such as being able to cope with daily life and experiencing positive interactions with the family member with dementia. Related key intervention components were the coping strategy 'reframing', employed in diverse ways by the caregivers to reduce daily stress, and the didactic method 'active skills' training', which involved active participation by the caregivers and the guidance of a professional group leader. One important factor hampering changes in caregivers was having difficulties accepting the caregiver role or accepting the losses due to dementia. CONCLUSION: The calmness model offers valuable insight into how this intervention can benefit family caregivers and aid in developing interventions targeting similar mechanisms and changes. TRIAL REGISTRATION: ISRCTN13512408 (registration date 17.05.2021, retrospectively registered).
Assuntos
Adaptação Psicológica , Cuidadores , Demência , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Cuidadores/educação , Demência/enfermagem , Demência/psicologia , Feminino , Masculino , Idoso , Pessoa de Meia-Idade , Teoria Fundamentada , Estresse Psicológico/psicologia , Idoso de 80 Anos ou mais , Estudos Transversais , Autoeficácia , SuíçaRESUMO
BACKGROUND: Preterm birth is a process that fundamentally alters parental or caregiver roles, particularly in the early weeks of childbirth. Caregiver experiences can be distressing due to struggles with an unfamiliar and potentially threatening environment of the Neonatal Intensive Care Unit (NICU). These experiences can affect the development of parenting or caregiving roles to a greater extent. Supporting caregivers of preterm infants through education and information sharing can significantly improve neonatal outcomes. This study sought to explore the experiences of caregivers with hospitalized preterm infants regarding the education and information they received from healthcare workers on the care of preterm infants. METHOD: An exploratory descriptive qualitative study that explored caregivers' experiences with the management of preterm infants hospitalized at the Level III Neonatal Intensive Care Unit (NICU) of a tertiary level facility with an annual delivery of almost 7500 and a bed capacity of 26. The study utilized a deductive approach and a purposive sampling technique to recruit 16 caregivers who participated in an in-depth interview using a piloted semi-structured interview guide. The interviews were audio-recorded, transcribed, and analyzed using thematic analysis. FINDINGS: The study identified three major themes, which were (1) preterm infant feeding and keeping infants warm, (2) routine procedures and activities at the NICU, and (3) preparation towards homecare after discharge. Seven (7) sub-themes were generated. Caregivers were satisfied with the education and information they received on infant feeding and keeping the infant ward. They also had adequate education that prepared them for home care of the preterm infant. Caregivers did not receive timely information and education on the health status of their infants and the care processes of the NICU. They felt they were left out as they were not involved in decision-making. Regarding the care of the preterm infant. The inadequate flow of information and use of medical terminologies were a great source of worry and frustration for participants. The study showed that although the NICU staff were willing to offer health education to caregivers, information giving and education were not structured and hence did not address all the needs of the caregivers. CONCLUSION: Healthcare providers caring for preterm infants include caregiver education in their routine NICU activities and procedures. These processes start from the period of admission till discharge. Their education sessions primarily focus on breastfeeding, keeping the infant warm and adequate preparation of caregivers for preterm infant home care. This notwithstanding there are gaps in caregiver education and information on routine procedures in the NICU as well as information on the health needs of the infant. Participants are not fully involved in the decision-making processes and the use of medical terminologies compound caregivers' frustrations and anxieties. It is important to develop structured educational programs tailored to address the information needs faced by caregivers to ensure optimal health outcomes for their preterm infants.
Assuntos
Cuidadores , Recém-Nascido Prematuro , Unidades de Terapia Intensiva Neonatal , Pesquisa Qualitativa , Humanos , Recém-Nascido , Feminino , Cuidadores/educação , Cuidadores/psicologia , Masculino , Gana , Adulto , Centros de Atenção Terciária , Adulto JovemRESUMO
BACKGROUND: Poor early childhood development (ECD) is a major global health concern that is associated with various adverse outcomes over the lifecourse. Parenting interventions especially during the earliest years of life can benefit ECD. However, there is limited evidence from Kenya about the effectiveness of parenting interventions for improving ECD outcomes especially across rural disadvantaged communities. This paper describes the study protocol for an impact and implementation evaluation of a community-based group parenting program that aims to improve ECD in rural Kenya. METHODS: We will conduct a cluster-randomized controlled trial to determine the effectiveness of a parenting program for caregivers of young children in Homabay and Busia counties in Western Kenya. Sixty-four village clusters will be randomly assigned to either the parenting intervention arm or the waitlist control arm with stratification by county. In each village, 10 primary caregivers with a child aged 0-24 months will be enrolled. The parenting program will be delivered through existing peer groups within communities whereby caregivers will receive counseling and psychosocial support to enhance their parenting skills and wellbeing to in turn promote ECD. The intervention curriculum comprises 21 sessions targeting various nurturing care messages, including early learning, responsive caregiving, child nutrition, health, protection, and caregiver mental health. Group sessions are facilitated by a trained volunteer biweekly for a total of 11 months. The primary trial outcome is an overall measure of ECD using the Global Scales of Early Development long form version. Secondary outcomes include various caregiver outcomes (e.g., parenting practices, mental health) and other child outcomes (e.g., socioemotional development, dietary diversity). All outcomes will be assessed at baseline and endline. We will also conduct a qualitative implementation evaluation at endline and interview various stakeholders to assess program fidelity, quality, and sustainability. DISCUSSION: This trial will evaluate the effectiveness of a parenting intervention on ECD and caregiving outcomes and assess program implementation quality as delivered through existing community-based peer groups. This study will provide rigorous evidence that can be used to inform scale-up of this program model that leverages existing community social networks and resources for improving caregivers' parenting skills and promoting ECD in rural Kenya and other similar settings across LMICs. TRIAL REGISTRATION: ClinicalTrials.gov #NCT06165315. Registered on December 11, 2023.